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    • #34884
      Steve D.
      Participant

        Question – Does anyone know of a single location that lists and regularly updates the status of all clinical trials taking place for IPF? Using Google provides way to many false positives and dated information. This is certainly a service I would subscribe to if available (assuming it’s reasonably priced)!!  Any inputs will be appreciated!!

      • #34893
        Mary Frances
        Participant

          MAUDE is something you can check in with

        • #34896
          Samuel Kirton
          Participant

            Have you tried the U.S. clinical trials site? There is also a matching tool for clinical trials on the Pulmonary Fibrosis Foundation site. Most convenient though you will find a Clinical Trial page at Pulmonary Fibrosis News on the top banner of the page.

             

            Sam …

          • #34907
            Gina Myhill-Jones
            Participant

              Hi. I think your best bet is always to talk to your respirologist and let them know that you’re interested in drug trials. I’m currently participating in a trial after being turned down for another. I’m in Canada and can’t find any one registery for tests running or planned. But my respirologist hasn’t failed to find the right fit for me.

            • #34899
              Donna Heiser
              Participant

                https://pubmed.ncbi.nlm.nih.gov/
                for all clinical trials for IPF

              • #34922
                John Dominguez
                Participant

                  Check out  https://www.clinicaltrials.gov/

                  Plug in subject parameters in the Search blocks and you will see the list. Currently (4/20/2023) there are 211 Studies found for: Idiopathic Pulmonary Fibrosis | United States

                   

                  • #34929

                    Thanks John! This website is indeed the most credible site to find IPF studies or clinical trials, many of the others are not vetted for credibility, however, this one is. Thanks for sharing for our members!
                    Char.

                    • #34954
                      Donna
                      Participant

                        I just asked my Dr.’s office if my name could be submitted to the Clinical trial/Research Division today.
                        I was told I may get a call in the next week.
                        I was approached by another Hospital in the area a Clinical Trial they were doing I declined there’s. I didn’t feel I qualified for it anyway. I must have gotten 10 calls and e-mails on participation.

                         

                  • #35041
                    Rob
                    Participant

                      I’m being screened for a Phase 3 Fibroneer trial.   My doctor is also considering an inhaled Teprostinil trial.  Has anyone had any experience with either of these drugs?

                      Stay well.
                      Rob

                    • #35048
                      sally williams
                      Participant

                        I am participating in the Trepostinil trial.  I am in week 10 of 1 year.  Pretty easy, inhailing the drug or placebo 4 times a day.  Not too many side effects, occasional headache, dizziness.  This is my second trial.  I believe that we need to do whatever we can to get rid of this dread disease.  I only participate in the ones that allow me to stay on Esbriet.

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